I was recently asked to do an interview with a gentleman who does a lot with disabled athletes. Turns out I’m disabled, not so much an athlete! 🙂 that a pretty good interview though I think, besides the fact that I say absolutely no less than 10 times. Have a good day!
It has been exactly one year since I moved from the comfort of my own home to where I currently am, a nursing home. I realize I am better off here regarding care (aides/nurses) because at home it could be so unpredictable. Here I am always covered with no worries. If one of my usual people calls off, there’s always someone that can fill in. That is something I could not promise my mom while living at home.
I was uneasy about coming but I figured with the help of my support system I would get through. That was taken away less than two months due to the facility going on lockdown because of Covid. I have been unable to see my family and friends since March 2020. Doctors’ appointments are something I look forward to because I get to leave temporarily and see the world.
Thankfully, I was matched up with some very special aides who have made this experience bearable, something I would have never thought possible. They make me smile and laugh daily, regardless of my less than positive and happy attitude at times. They have become way more than just ‘’help’’. They are my friends. People I appreciate and enjoy seeing. Without them, I think I would’ve lost my mind a long time ago. I could never fully explain just how much they mean to me.
I received my first vaccine shot Friday. It’s been two days and I feel fine. My arm isn’t even that sore but then again what do I know, I’m a quadriplegic 😊 My hopes are this is the first step of getting things under control and hopefully seeing the facility open back up sooner than later.
I thought going through paralysis was the hardest thing I would ever have to do. Overcome having a feeding tube, not being able to breathe, learning how to breathe all over again and having a trach which eventually I had removed. Relearning life basically. All things I was told would probably never happen. As bad as that stuff sounds, I had my family and friends by my side. Never take yours for granite. Appreciate what you have and everything that’s been given to you because you never know when it could be taken away.
If you don’t know, I try to make a playlist of new music that I find every week. Here are the first two for the new year…
I spoke with someone from Restorative Therapies regarding a quote for a new bike. She was extremely nice with not so great news. To get something like I have now would be around $25,000. I am thinking maybe I need to have someone come in from RTI to look at the one I currently have instead. See if maybe there is some work that could be done to fix the things that are wrong. I would have to do one hell of a fundraiser to afford a new one or any other type of equipment. I ride it every day and benefit greatly from it. I sure hope mine does not break down for a long time. I was lucky enough to have so many people donate for me to have the things that I do.
Some of the stuff that goes on once you enter a nursing home is unbelievable.
To start, they get basically all my money from disability every month. I believe I get $35.00/mo.
My nurse aides are allowed cut my fingernails but not my toenails. I spoke with the podiatrist today and she said I can get my name on the schedule to have mine cut, but it is going to be every two months. Two months? Wow. That is only going to set me up to get ingrown toenails, which is something SCI people are prone to get due to not being mobile. I understand nobody wants an ingrown toenail, I get it, but it raises a person with the spinal cord injury blood pressure, gives us spasms and can affect our bodies in other negative and dangerous ways (Autonomic Dysreflexia). I feel like when I tell people things like this, they think I am overreacting. It is just something else a typical facility does not understand because out of their patients, very few have spinal cord injuries. There needs to be a SCI nursing home with doctors and staff that understand what all the injury entails. If I ever win the lottery I know what I would invest in! I guess you need to play to win! Not something I do but maybe I should start!
Just something in general that is a weird to me – my appointments get scheduled for me. So if I have a dentist appointment on Tuesday, I wouldn’t find out until Monday sometime. Which is a great example because I need to see the dentist because of some pain. I let someone know and they were going to pass along to the dentist but now I do not know what is happening, when the appointment might be, etc. and if I ask again, I just feel like I am annoying people. My mouth is bothering me and I have to sit here, literally (ha ha) and hope it is sometime soon. I miss making my own schedule and knowing what is happening when. To me it is weird because I’m 38, not 88.
To top it all off, we are still being quarantined. I have not seen my family or friends since February. Almost eight months ago. I have seen my girlfriend one time, when I was hospitalized, which I do not remember due to confusion. All things I have talked about, so I am sorry for being repetitive, but unfortunately this is my life right now. I just miss my people.
Hope all of you are hanging in there and surviving this mess. As always, thank you for reading. I appreciate your interest!
I have been trying to make standing a part of my regular routine. Maybe not daily but as much as I can with my schedule. Ever since my last blog, September 19, I have done the following:
9/20 1 hour 18 minutes
9/21 40 minutes
9/23 30 minutes
9/26 50 minutes
9/27 1 hour
9/29 1 hour 20 minutes
9/30 55 minutes
I would stand longer but my blood pressure tanks. However, something very bizarre did happen last night. My BP went extremely low but for whatever reason it jumped back up. That was after an hour and twenty minutes. That is the first that has happened as far as I can recall. No rhyme or reason, just my weird unpredictable body.
I scheduled a call with Restorative Therapies this coming Monday. They are the manufacturer of the bike that I ride pretty much every day for 2 hours. When I say bike, here’s what I mean if you’re not familiar – (https://restorative-therapies.com/ifes-systems/rt300/). It is beneficial.
Since 2005 Restorative Therapies systems have been cleared by the FDA to:
- Reduce muscle atrophy
- Reduce muscle spasms
- Improve local circulation
- Maintain or increase range of motion
- Facilitate muscle re-education
The one I have is giving me some problems lately. Not to mention I have been using it hard for the past eight or nine years. Over 17,000 miles. They are extremely expensive. I figured it would not hurt to talk to someone and at least get an idea of the cost. Maybe I will just have to start working on a new fundraiser!
When I woke up this morning my blood pressure was really low, compared the usual. It was 99/65. Typically my blood pressure runs right around 110/70. Give or take. I took it 45 minutes later and it dropped a little bit more (92/56). Again, not the usual for me at all. I got out of bed and rode the bike for 2 hours. My plans were to stand after I got off the bike. I took my blood pressure before standing, just to know what the starting point was. Well, it was high. Extremely high. 170/115. I’m assuming it was because of my pain in my foot when I ride. I slowly started to stand, going in small increments like I’m supposed to. Going up too quickly will make my BP drop really fast. 50 minutes after my really high blood pressure, it dropped to 110/72. It continued to drop to the point where I had to come down.
4:15 PM 94/66
4:25 PM 83/61
4:30 PM 75/51
4:35 PM 72/50
At that point I had to quit. I took it once I came down the whole way and at 5:00 PM it was back up to 118/81. It’s crazy what the spinal cord injury does to your body that some people don’t realize or understand. It’s not just the fact that I can’t walk. Just wanted to share with everyone. Oh yeah, I was able to stand for 46 minutes. 21 more minutes than I could yesterday! Thank you for reading!
I haven’t been able to stand anywhere near 1 hour 45 minutes like I did last weekend. Not sure what I did differently to be able to tolerate everything but I haven’t been able to get anywhere near those numbers. The past few days it’s been in the 20s. I forget what the numbers were Tuesday but Wednesday I didn’t stand, Thursday I was able to do 22 minutes and 25 minutes today. It’s pretty good but not exactly where I’d like to be. I had to stop because my blood pressure keeps tanking. Today it dropped to 67/51, which is ridiculously low. I decided to come down and see if it went up rather than take a pill. Fortunately it did. I’m thinking the more I do it, no longer I’ll be able to stand. Anyway, here are two pictures from the past two days. Just thought I would share.
Last week I stood for 23 minutes before I had to stop because of my blood pressure dropping. Today I stood for 1 hour and 46 minutes! It was crazy, in a good way. I haven’t stood that long in quite some time. My blood pressure jumped all around the place. It went down to 85/67 but I kept going. Normally, as far as my routine goes, when I have blood pressure below 90 I need to take a pill to raise it. I decided to hold off and keep standing. We kept monitoring my blood pressure and surprisingly it actually came up. The only reason I came down was because my heart rate increased and we wanted to do other things! It’s crazy how the body works! Glad to be standing again.